Shaken for Life: The survivors of shaken baby syndrome

Hours before Braxson Jones would receive life altering injuries to his six-month-old brain, a video showed him in a diaper lifting up his head and swiveling around to see his big brother. In the days following, Braxson’s brain had been so jarred, doctors had to remove his skull as his brain continued swelling out of the incisions.

“I said, ‘Braxson, if you want to go to God, if it’s your time to go. If not, if you want to stay, if your journey isn’t over, then I’m going to fight for justice and I’m going to get you healed,’” said Susan Jones, Braxson’s biological mother.

Life as Braxson knew it changed on July 24, 2016. On that summer night Susan received a call in the middle of her overnight shift as a registered nurse, from her then-husband that Braxson was cold and stiff.

Braxson stayed in a coma for five days. Doctors told her it was one of the worst cases of child abuse they had ever seen. Her then-husband was charged in late April of 2017 in connection to the child's injuries.

Based on MRI's, doctors told her Braxson would be a “vegetable,” wouldn’t be able to breathe on his own and only had 10 percent of his healthy brain tissue left.

But Braxson persisted. After hours of testing and hundreds of doctors, the infant fluttered his eyes and came out of the coma.

Nine months later, Braxson is 15-months and is re-learning his “firsts” for a second time. He’s unable to hold his head up on his own, doctors think he’s legally blind and he has a feeding tube at all times. Braxson is just one of hundreds of survivors of shaken baby syndrome.

“It’s a life-long battle,” said Susan Jones. “We’re nine months’ post injury, and it still hurts just like it happened yesterday.”

Austin’s Story: Living with Shaken Baby Syndrome

Austin and his dad, Brian Replogle, sat side by side in matching recliners as Austin vigorously scrubbed through the Monsters, Inc. movie on his iPad in hopes of reaching the final song, “If I Didn’t Have You.”

The 18-year-old and his dad, a South Bend firefighter, began singing the lyrics in unison.

“Things like that, he’s laughing at stuff, having a blast. It’s infectious,” Brian stopped and Austin looked over at him. “He’s absolutely happy, and [he] doesn’t know life is any different.”

Austin's biological mother’s boyfriend was charged and later convicted of abusing Austin when he was two-and-a-half years old. Brian, who was Austin's uncle by marriage, later adopted him.

At two, Austin spent two-and-a-half weeks in a coma and five months in the hospital because of the abuse injuries.

“He’s blessed to have the injuries that he does have given the injuries he sustained,” said Brian. “Half his brain is dead, and he can walk and talk and play and laugh.”

Since Austin’s injury, he’s had nearly 12 orthopedic surgeries in 16 years.

“That’s a lot to handle for anybody, but especially a kid who doesn’t understand what’s going on and why he’s going through all that,” said Brian.

Today, Austin is almost 19 but living at a 5-year-old’s level, and he requires 24-hour care. When Brian’s not able to be there because of work, he has a full staff who comes in to take care of Austin.

“I know it’s not for everybody – my job’s not for everybody, being his dad is not for everybody,” Brian paused. “But it’s the most rewarding thing I’ve ever done, and I would never second guess it.”

‘I believe in miracles’

On a warm Wednesday afternoon in Chicago, Susan changed into pajamas, grabbed Braxson who was crying and climbed atop a stretcher. Dr. Lenny Cohen asked her if she was ready, then pushed the stretcher into the glass oxygen chamber. He closed the door and latched it.

“Now we wait,” he said.

Cohen owns Lakeshore Hyperbaric Center. He started the clinic a year ago and uses a pressurized chamber that fills with oxygen for several medical purposes.

“We’re looking at bettering motor skills, ability for him to walk, ability for him to swallow at times – those basic rudimentary factors that we take for granted,” said Cohen.

Susan and Braxson drive 60 miles from Hebron, Indiana to spend an hour in the chamber four times each week. It’s a costly decision, but one that Susan wanted to take and Cohen was willing to work with her on.

She’s paid for 25 sessions so far, but plans to undergo at least 200 more until Braxson turns two-and-a-half. Cohen said they’re noticing small improvements, like Braxson’s ability to better hold his head up.

“He’s beat all odds,” said Susan, after coming out of the chamber. “I’m going to do whatever it takes to get him healed so that he can have the best quality of life possible.”

Quality of life is important for Austin and his dad, too. Doctors gave him a practical piece of advice many years ago: let him try to be a kid.

“The doctor basically said there’s no prognosis that they could give us,” Brian said. “That it’s completely based on what we allow him to try and do. If he wanted to do something, let him try it and let him fail or let him try it and succeed, and that’s exactly what he did.”

Austin has surpassed what some doctors ever thought he could do. He’s watched dirt bike races, posed with Batman, cheered on the Irish and learned to walk again. But it’s the hugs and the “I love you daddy” each morning and night that put it in perspective for Brian.

“It’s the best feeling in the world, but I know there are families out there who have lost that opportunity for the same reasons he has his disabilities and his struggles,” said Brian. “And that’s what makes it hard for me is just thinking about those families.”

SBS: How to prevent it

The National Center on Shaken Baby Syndrome estimates that 1,300 children are shaken every year. The organization estimates that 25 percent of victims die from their injuries, and far more live with lifelong disabilities.

A spokeswoman for the agency said the numbers are an estimate based off Centers for Disease Control data; she said it’s difficult to accurately track shaken baby syndrome because states are not required to report data.

The spokeswoman said it’s also difficult to track because of HIPAA boundaries. The CDC added that shaken baby injuries are not only under reported but also misdiagnosed.

Dr. Tom Soisson at the South Bend Clinic works as a special investigator for the Department of Child Services.

“It makes it harder to convince people it’s a big problem,” said Soisson. “But we do know from various different ways of looking at it through statistics that it’s a big problem.”

WSBT 22 requested records from St. Joseph County’s Metro Homicide Unit which is called upon to investigate infant deaths. According to their records, one child has died in the past 14 years because of shaken baby related injuries. That victim was Denham Carter who died after being shaken by a live-in boyfriend in 2004, records show.

Soisson said most children may not be diagnosed until much later in life, and the actual abuse event may never be known.

“If you violently shake a baby’s head, you don’t have to shake them for five minutes or even two minutes. If you shake them for 30 seconds or more there’s a good chance that you’re going to get a significant injury,” Soisson said.

NCSBS advises parents that shaken baby syndrome is caused by severely shaking a child; not by things like bouncing a child on your knee, tossing a baby in the air, jogging with your child, falling off furniture, or sudden stops in a car.

“We think the brain continues to develop throughout life but at least until your twenties,” said Soisson. “The more significant issue is the inability to keep it from happening.”